This morning has been terrible. I woke up to Al being awake. He had, had a BM first off and was complaining about this. I cleaned him up and wondered why he is having these so often, when he never used to even go by himself without medication.
He was crabby, very crabby. He was complaining about his arm, his butt and his ear. I checked his ear and it was bleeding. Just yesterday it was completely…
This morning has been terrible. I woke up to Al being awake. He had, had a BM first off and was complaining about this. I cleaned him up and wondered why he is having these so often, when he never used to even go by himself without medication.
He was crabby, very crabby. He was complaining about his arm, his butt and his ear. I checked his ear and it was bleeding. Just yesterday it was completely healed. Now it was crusty and white illness was draining from inside his ear.
I doctored it the best way I know how. He had a temperature of 104.2. I immediately gave him his medication. He was stuttering and I couldn’t hear a word he was trying to say without playing the guessing game, which I did.
When I watched his lips I realized they were not moving. I asked him to open his mouth for me and it looked like a giant spider web. The infection was inside his mouth and it was gluing his lips together.
Once again I swabbed his mouth to allow his lips to move. His eyes were draining. He had a sore on his buttocks. His one arm was slightly covered by a throw blanket and he was complaining about this. I uncovered it. He wanted the fan on so I turned it on low.
He wanted breakfast so I gave him some pudding and he ate two bites and wanted no more. I think Al is so miserable that he doesn’t have any choice but to complain. He asked why there is no nurse here.
I told him it wasn’t her day to come. He asked where staff was and I said we don’t have much staff here any longer and that he would have to learn to be content with me more often.
He asked why no one wanted to come help me and I had nothing to say. I wanted to pipe up with because you and I have leprosy, but I kept my big mouth shut. I got a call from the caregiver saying the two bosses want to come over today and shadow or train watching us take care of Al.
Now here I got a little snotty to myself I guess. For one, these two bosses are never going to come here and work. They are office people and have their own responsibilities. For another reason, these are the two that sprang the unannounced visit the other day.
I told staff I don’t give a hoot. It is a bad morning. I feel like I am going to have a panic attack. Al is in a crabby mood. Tell them I don’t care if they come, and if they don’t come, it’s alright too.
A thought entered my mine at that very moment. I can’t do this anymore. I am going to be forced to place Al in a nursing home. He is miserable. Then I started fighting, trying to stay strong.
I had been practically begging Hospice to let me give Al a special cream for extreme pain. They have continued to tell me no. Letting me know that most care givers don’t apply it right. I told her I had used it with other patients and was very familiar with it. She ignored my plea.
I decided to call Hospice after leaving Al’s room. There was not one nurse available. I ended up being forwarded to the administrator nurse where I got a voice recording. She did call back and pretty much said, ” I will give his primary nurse a call. She is off today, but she is familiar with his case. I just think his illness is too rare and I can’t help you.”
Wow, I thought, the head hauncho doesn’t even know how to handle Al’s MSA, this makes me feel real comfy. This regular nurse informed me yesterday when she was here that she wasn’t going to be coming tomorrow either; that a replacement would be sent. This seems to be a regular thing week after week. She is rarely here on Fridays. I feel like it has something to do with the fact I bitched about wanting a Hospice visit three times a week instead of two.
She called me about twenty minutes later and insisted that I give him this one medication she had brought. I fought it for two reasons. One, it makes him wired and he doesn’t sleep. Two, I am the only care giver today minus two hours and I didn’t want to have to fight this whole, ugly mess all day.
I asked her to please get me the cream. She said no. She said Al was too wet and too oily. I said, ” What? He hasn’t sweated for a couple of months or so.” She then said, ” His skin is too oily, so the answer is no.” She said his Bm’s are from his illness, just part of the process. She said there is nothing more to be done about his ear.
I felt defeated, slammed to the floor, helpless with nowhere to turn. Here I have a brother who is miserable as all get out. A high fever I am fighting. His bed sores, his body locking in place. His ear bleeding. His mouth a cob web, and I get two hours of staff help so Al can have his bath, and not one damn nurse will come out nor help me.
I am so sorry my friends. I just feel like I have been beat down with an iron skillet and I can see nothing more anymore but black all around me and huge gobs of gloom.
Who I am 